You shouldn’t be surprised. Putting it simply (because I’m an English major and don’t have the scientific knowledge to put it any other way), the human body is held together by a framework of muscles and bones. SMA is a muscle wasting disease, which you should know by now basically just means my muscles are shitty at doing anything that muscles are supposed to do, and they’re constantly getting shittier. Don’t believe me? Since I started this blog 16 months ago, I’ve lost the ability to lift my hands any higher than mouth. When my nose or eyes or forehead itches, which seems to be all the fucking time now that I can’t reach those spots, I have to ask someone for a fork or a straw which I use to relieve the itch. Yes, it looks weird, but it’s better than constantly asking other people to itch my face for me. Anyway, my muscles, a large part of my framework, suck.
Another side effect of having shitty muscles is having shitty bones. If you’re not aware, bones that don’t bear weight for long periods of time become extremely weak and easy to break. My doctors tried to delay this process as much as possible when I was a little kid by making me use a “stander.” The stander was a torture device that held my body in a faux-standing position (like a fauxhawk, but different). My legs could never support the entire weight of my body, but the idea was that if I used the stander every day, forcing my legs to bear at least some weight, my bones would strengthen and not become as weak later on in life. However, 5-year-old Shane did not appreciate this logic and thought of the stander only as another way for his therapists to hurt him. I avoided the stander as much as possible and eventually my muscles and bones became so weak that standing in the stander became too painful to bear. I’ve been either sitting or lying down ever since, bearing almost no weight, and this has caused my bones to become pretty weak over the last 20 years.
We now understand why I’m fragile. However, I’m guessing it’s difficult to conceptualize how fragile (or how not fragile) I actually am. I don’t want you to think that flicking my arm will cause a compound fracture, but punching it with any amount of force might. If we ever meet in person, please don’t punch me.
To give you a better idea of my fragility, here are some things that would probably break me:
I suppose you can think of me as a toddler, in terms of how easily broken I am. (Are toddlers easily broken?)
My fragility is not, however, the only point of this post. Instead, I’d like to tell you about a recent event in my life when I legitimately feared for my safety because of my fragility. Let’s begin.
Several weeks ago my good friend Lily surprised me with an awesome phone call: “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”
I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my non-disabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.
In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was speaking in the basketball gym at Moravian, a smaller-ish building that does not have a built in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.
I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”
“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.
SMA does not cause seizures; I’ve never had one in my life, but toss out the word seizure next time you’re trying to get something from a person of authority and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.
While waiting in line to get in to Johnston Hall, secret service agents approached us and instructed “my companion” and I to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him. Spoiler alert: I’m not a terrorist; that’s not where I’m going with this story.
The gym was packed to capacity. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit it’s 1000 degrees in here,” and “Where the hell am I supposed to sit?”
Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.
(In noisy places, surrounded by people who’s heads are generally 2-3 feet above mine, it’s easy to feel small and insignificant. Even when screaming at the top of my lungs, I don’t have the lung capacity to be very loud. I’ve grown accustomed to not having much of a voice at loud, public events. I rely on facial expressions and the voices of my companions to communicate with other people.)
A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She motioned to follow her and led us down a narrow path created by a rope barrier along the edge of the gym.
When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.
Someone off the my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this isn’t the first time this awkward situation has arisen so I didn’t let it get to me.
A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.
I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and it ultimately was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.
Shane, not to be rude, but why the fuck did you start this story by telling us how fragile you are?
Calm down, agitated reader, I’m getting there.
Fast forward a few hours, the speech was pretty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it too. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who spent a majority of the speech yelling “DOWN IN FRONT,” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon in the making. In front of me sat a very old man who read a very graphic war novel and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans. One of them was black, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.
Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.
When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and JUMPED out of her chair. I kid you not, she literally leapt out of that fucking wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards Michelle.
This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.
To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.
Clearly I did. Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way. She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.
Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obama’s probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.
The fact that I am disabled is deeply ingrained in my mind. Everything I do, every funny, awkward, unusual, and annoying event in my life—even boring daily routines like brushing my teeth—is affected by my disability. Living this way for 20 years has made me almost numb to it. When I’m lying on my bed, peeing into a jar, staring at the ceiling while I relieve myself, I’m not thinking, “This is an odd way to go to the bathroom compared to able-bodied people, what a peculiar result of my disability.”
I’m just going to the bathroom, probably not thinking about anything.
Obviously, I’m aware of all the ways my disability makes my life abnormal. If I weren’t, this blog would just be pictures of kittens, and Justin Bieber, and GIFs of Tyler the Creator laughing, and more pictures of Justin Bieber. But I’ve never truly taken the time to consider how my disability has helped shape my identity.
I’ve been working on a project lately that has unintentionally forced me to think about my own disability identity. In this post, I’m going to attempt to make sense of what I’ve been learning about disability identities, and subsequently, what I have learned about myself along the way.
As I mentioned a few months ago, one of the psychology professors at Moravian College, Dr. Dunn, asked me to work with him over the summer to compose an article on disability identity. I agreed immediately even though I admittedly know very little about psychology. Dr. Dunn has written an immense amount of work and done numerous studies in the psychological field of disability, so I figured it would be a learning experience for me. It was.
At its most basic level, for someone with a disability, disability identity involves feeling positively about oneself as an individual and identifying with the disability community as a whole. For our project, we wanted to look a little deeper and develop a model that identifies the most prevalent themes in all disability identities. To do this, we surveyed (or, are surveying, since we are still working on it) a variety of narratives published by people with disabilities of all types. This style of research allowed us to pinpoint recurring themes that are experienced by many or all people with disabilities.
We’ve identified six major themes that are encompassed in the identities of most people with disabilities: affirmation of disability, communal attachment, self-worth, pride, discrimination, and personal meaning (Dunn & Burcaw, 2012, in progress).
As I read these stories by other people with disabilities, I couldn’t help but to consider how each of these themes plays a part in my identity. Here is my reflection on a few of those themes.
Affirmation of disability
What it means: The belief that living with one’s own disability is a valuable experience that contributes to a positive personal identity.
On the surface, I believe that I possess this characteristic. Living with SMA has opened a world of opportunities for me, and you only have to read a few of my stories to know that I genuinely enjoy the fuck out of life. The list of amazing occurrences that were byproducts of my disability is incredibly long. Until a few years ago, one of the movie theaters in Bethlehem allowed people in wheelchairs to watch movies for free. I guess their logic was that it would take a miracle for us to make it out of our houses more than a few times a year, so if we happened to overcome all the odds and make it to the theater alive, we should be rewarded with a free movie. Obviously, I abused the free movie privilege so much that I wouldn’t be surprised if their reason for eventually revoking the policy was, “that asshole kid in the wheelchair who saw a movie every other day for three years.”
However, as I read more about affirmation of disability, I found a small caveat that I could not agree with. In a study of people with disabilities, it was found that many of them were strongly opposed to receiving any type of treatment that might cure them of their disability. Granted, this is not to say that one must choose to not be cured in order to have a positive affirmation of their disability, but I was baffled by the results of this study.
Sure, growing up with my disease has substantially influenced the person I turned out to be, but given the hypothetical opportunity, there is no question in my mind that I would choose to be cured. My identity and personality would not suddenly vanish just because I’d be able to walk and run and kick people in the face. Yes, I love my life, but I would be lying if I said that I’d choose to stick out the fight with SMA if I didn’t have to. That’s not like… cowardly, is it?
What it means: A desire to affiliate oneself with the disability community as a whole, a preference to associate with other people with disabilities.
If you read my story about muscular dystrophy summer camp, you’ll remember that I generally don’t enjoy hanging out with other people in wheelchairs. It may be because I developed an aversion at a young age and never gave myself a chance to get to know anyone that uses a wheelchair. It may also be that I’m not around people in wheelchairs very often in everyday life. It may be that I see everything I dislike about myself in other wheelchair people, so I avoid them to protect my self-esteem. It may be that I’m just a terrible person. In that regard, I do not possess particularly strong feelings of communal attachment.
I do, however, realize that I am a part of the disability community, and that we have a lot in common. We all face the difficulties of living in a world that is still far from being handicapped accessible. When I see a restaurant that has one fucking step to get into the front door, I don’t get angry because I personally can’t eat there, but rather, at the fact that the owners could be so ignorant. They might as well hang a sign on the front door that says No Wheelchairs Allowed. I’m looking at you, Subway.
What it means: The idea that one values oneself, in regard to one’s ability to perform tasks that are deemed important by the individual, others, or society (Dunn & Burcaw, 2012, in progress).
Let’s be honest, there are just some things that I will not accomplish in my lifetime. I’ll probably never win the MLB home run derby, and chances are I’m not going to break any Olympic records. I will never tie my own shoes or wipe my own butt. I will never be able to drive a car, or a boat, or a plane. I’m pretty sure I will never become the President of the United States.
Society values all of those things.
But I will make you laugh, and I will go to school and get a degree, and I will do awesome things with my friends, and I will do stupid things with my friends, and I will try my hardest to make my nonprofit succeed, and I will get my book published someday, and I will kick your ass in FIFA, and I will get a real job, and I will live life with intense passion, and I will make you laugh, and laugh, and laugh.
And that’s what I value.
When I was very young, I learned that being in a wheelchair did not mean I couldn’t play sports. Obviously, the way I play sports is a little different, actually a lot different, than the way most people play, but I have found a way to involve myself in almost every sport my friends have ever played. Throughout my life I also experimented with joining organized sports leagues designed specifically for people with disabilities, which was absolutely terrible simply because I understood the sports on a much higher level than the other kids. I promise I’m not being a dick! Here, let me explain…
In my toddler years I went through the normal phase of wanting to go fast all the time. So while my childhood friends were riding their Big Wheels and tricycles as fast as they could down our back alley, I was racing right next to them in my wheelchair. My mom allowed me to ride around our neighborhood block at a pretty young age, and from that point on, my friends and I spent hours on end being cops and robbers or cowboys and Indians, as we raced as fast as we could around the block until the sun went down. My brother learned to ride a bike without training wheels when he was 3 years old, so he quickly joined us in our daily adventures.
It was during these days of non-stop play that I mastered driving my wheelchair at its top speed, which is 12 miles per hour. Cops and robbers is basically just another name for tag, so I developed the ability to chase people at top speeds, all while constantly monitoring their speed to assure I didn’t slam into them and kill them if they stopped quickly or changed directions. Today, people are always amazed by how well I handle my wheelchair, and I have to give all the credit to my childhood days of chasing my friends around our block.
Naturally, as we got older we became more interested in sports, and our games of cops and robbers turned into games of football, basketball, soccer, baseball, and hockey. You might be wondering how I was able to play these sports with my friends. That is what I am here for…
When we played football I was usually on defense all the time. Since we didn’t have any really big grassy areas to play on, our football games where two-hand touch anyway. We adapted the rule so that all I had to do to “tackle” the ball carrier was get my wheelchair within a foot of his legs. This got really dangerous when my friends were running around at full speed and I was trying to get within a foot of them without running them over. When someone on the offense would run out for a pass, they had to deal with the 400-pound wheelchair flying towards them while they tried to catch the ball. Every once in a while I would accidentally nail someone in the shins, which was enough to cause them to fear me for the rest of the day. I didn’t like to play offense when we played football because all I could do was run with the ball, and I knew my friends were faster than my wheelchair, so if I ever scored a touchdown, it would only be because they let me, and I hated that just as much as they did.
On the basketball court, I can’t shoot, pass, or catch the ball so I basically just drove around, getting in people’s way, trying to make them mess up. None of us were ever really into basketball so we didn’t try to figure out a way to incorporate my wheelchair.
Quick story, when my brother was in 7th and 8th grades, he played on our church’s basketball team with a bunch of kids who had no idea how to run in a straight line without falling, let alone dribble a basketball or do anything close to productive on a basketball court. I had to do community service for my high school’s graduation requirement, so I volunteered to help coach the team. It was hilarious watching these kids try to learn the offensive plays, when a majority of them barely knew how to make a layup. I will be honest; I spent most of the time laughing with my brother about how much of a joke the team was. My brother is a decent basketball player, however, he was not nearly good enough to carry the team in games against other churches, and I think we may have won 4 games total during my 2-season tenure. The guy that was in charge of the entire league made a really big deal out of presenting me a Coach of the Year award during halftime at one of the games. It was an extremely nice gesture by him, but I felt bad because he and most of the spectators in attendance didn’t realize how much of a joke I made out of coaching this team. All they could see was a kid in a wheelchair that hung around with the team and was an amazing individual for wanting to coach despite his disability.
Moving on to baseball, which is difficult to play just for fun, so as kids we played a lot of wiffle ball. I can’t bat, throw, or catch, but baseball is my favorite sport, so whenever we played, I would pinch-run for my friends. Basically, I just made a huge deal out of the base running aspect of baseball. I stole bases like Ichiro. Honestly though, I got just as much enjoyment out of watching and being the umpire.
As we grew up, my brother realized he was actually really good at baseball and spent most of his summers playing on various teams. He and I spent a lot of time discussing and practicing baseball when he wasn’t playing for a team.
I’m not sure how or why, but my parents found out about a baseball league designed for people with severe disabilities, whether they be physical or mental, and suggested I try it out. I was probably 10 or 11 at the time, not quite sure, but I vividly remember this terrible experience and all the reasons I hated it.
The league was called Challenger Baseball League (worst name ever) and their motto could have been something like, “Where everyone wins!” I showed up to the first game in my bright orange uniform, totally excited to kick some ass. Jesus Christ, I was in for a rude awakening. One of the first things I noticed, while we were waiting for all the players to arrive, was that literally all the kids seemed more disabled than me. (From here on you need to keep in mind that I am not making fun of these kids, just telling you the truth.) Most of them were either: talking to themselves, drooling, having severe tantrums, or trying to escape from their wheelchairs. I immediately felt out of place because there was no way on earth these kids understood baseball.
Once both teams had gathered, the coaches started explaining the rules. Each kid would be accompanied by a parent at all times, whether batting or playing the field. Ok that made sense; I had planned on my dad helping me do the physical stuff, and on the way to the game we had even discussed how I was going to quickly communicate to him where to throw the ball when we were in the field. I made him repeat to me that I would always want him to try to get the lead runner out, unless we had the chance to twist a double play.
Rule number two: Nobody is ever out. Every batter gets to bat once an inning, run the bases, and score. Also, there was no score being kept.
WHAT THE FUCK?
That rule caught me way off guard. This was becoming no fun and we hadn’t even started playing. However, when we did eventually start it got so much worse. I was the very first player up to bat, and my dad hit a slow roller to a kid in a wheelchair at shortstop. This particular kid had some kind of disorder that caused his head to be constantly moving in all directions, and it was very obvious he didn’t really know what was going on as his mom moved him to the ball and picked it up to put in his lap. Meanwhile, I was booking it down the line to first. I stopped at first base, kind of disappointed that his mom hadn’t tried to throw me out. Although it’s probably good that she didn’t, because the kid playing first was playing with the dirt. For a second, I stayed on first and thought, “wow this is stupid.” And then it got even stupider. The fans, coaches, and parents helping out were still cheering for me. It took me a moment to realize what was going on, but then it clicked, they wanted me to keep running the bases. Nobody was even going to try to get me out. So I reluctantly began towards second base, not even bothering to go fast, proceeded on to third, right past the kid with the ball on his lap, and eventually made my way to home plate. It was the most degrading and unrewarding feeling I had ever felt up to that point in my life. Everyone just worked together to let me get an inside the fucking park home run on a ball that barely made it past the pitcher’s mound. All the parents and coaches emphatically congratulated like I was safe at home because of my chair-driving ability. I didn’t even have to say anything to my dad; he knew I was completely done with this league.
Unfortunately, my dad made me stick out the rest of the season to teach me the lesson of finishing what you start, but we spent most of the games making fun of how god-awfully fake and unrealistic the games were. Don’t get me wrong, I think the Challenge League is a great program for lots of kids; it provides a unique experience for many disabled kids who all really enjoy it, but the fact that I was cognizant of how fake it was made it impossible for me to enjoy.
A couple years later my parents talked me into joining a “Challenger” style, bowling league. To bowl, I use a ball ramp that is available at most bowling alleys. Basically I just line it up by bumping it with my wheelchair and then push the ball down. Challenger bowling was fun for a couple weeks, until a kid in my lane had a severe seizure during laser bowling. That was the end of me trying to participate in sports leagues with my wheelchair brethren. I just couldn’t fit it or have fun with those kids. I’m an asshole.
Rewinding back again a few years to fifth grade, and I will tell you about my greatest moment involving sports. My elementary school had an after-school intramural sports program for the 4th and 5th graders. When the floor hockey sign ups came around I decided I was going to try it. In the past, I had played floor hockey in gym class by taping a stick to the front of my chair, so I knew I could do it.
On the first day of floor hockey, when we would meet our team and go over the rules for the season, the gym teacher in charge was kind of taken back by me being there. For obvious insurance reasons, he was hesitant to let me play, but I convinced him to let me if I only played goalie.
I don’t remember if my team was initially happy or sad to have me, but after a few games they were certainly happy. It turns out, my 400-pound wheelchair took up most of the goal, and I was good enough with my wheels to deflect any shots that kids tried to slide under me.
To make a long story short, our team made it to the championship game that was played against another elementary school. On the day of the final game, the opposing team entered the gym and lost control of their jaws when they saw me sitting in the goal, focused as shit. We won the game, mostly because our offense was saucy, but I had a few key saves to seal the deal. Winning that game is still a story I often tell today, because it is a good example not letting my disease get in the way of normal life.
Today, sports are still a huge part of my life. I don’t play them as much or with as much intensity because I’ve become a lot more fragile over the years, but I go to all my brother’s baseball games and my friends and I are constantly watching or attending professional sports games.
My favorite teams are the Philadelphia Phillies, the Philadelphia Eagles, the Denver Nuggets, the Philadelphia Flyers, and the Philadelphia Union.